Hello,

Diagnosed with Graves’ Disease in 2008.

I noticed pressure behind my right eye about 3 years ago (2009) and it felt like a thumb pushing on the inside of my eye.

Three years later the pressure is felt now around my entire right eye area.

Both MRI and CT scan in 2009 show no signs of any orbital issues.

Pressure gets worse each year but you cannot “see” it to look at me. I cannot get a doctor to agree. Some say could be early TED, someone at the Mayo Clinic for Graves actually responded to an email from me once and said TED typically affects both eyes, not just one.

If I hold my hands over my eyes, it feels (to me) uneven. It also takes just a slightly bit more to close my right eyelid, but not anything anyone looking at me could notice.

Current opthamologist says he can notice slight (pressure?) but he said so minimal not sure how I can notice it, but he says could be TED.

There are so many different posts, can anyone sum up how their early stage of TED began to feel to them? Was it both your eyes or just one?

Thanks…

Hello - Hopefully, you will get some other responses, but here is some general info on TED:

(Note on links: if you click directly on the following link, you will need to use your browser's “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.kellogg.umich.edu/patientcare/conditions/graves.disease.html [kellogg.umich.edu]

Hope this helps – wishing you all the best!

Thanks Kimberly that was an interesting link. I also hope to hear from others about their personal experiences in particular if BOTH eyes were symptomatic or only one. Thanks…

At an NGDF conference many years ago, asymetrical involvement of the eye muscles was discussed as an indicator of TED. In other words, it was not expected – back then, at least – that both eyes would be impacted identically. Obvioulsy, I'm not a doctor, so I am not “up” on the current research.

As far as “typical” early symptoms of TED, I'm not sure there are any. Some folks have rather serous extrusion of their eyes (protopsis, or exopthalmos), without doubling of vision, while others of us have doubling without significant exopthalmos. Also, having “some” symptoms of TED doesn't mean one will go on to having all of them. I had serious doubling of vision, but did not go on to the type of horrid eye disease that others of us get.

I eventually was given an ultrasound of the eye muscles that demonstrated TED – although the diagnosis had been at least tentatively made before then.

I never experienced the sensation of “pressure.” That does not mean, however, that it is never an indicator. It just was not part of what I experienced.

I felt that exact same pressure you described. It was my first symptom, and it lasted several months so I got in to see an ophthalmologist who said he was experienced with TED but that turned out to be a crock of you-know-what. The pressure became so strong that it eventually became pain instead of just pressure. I felt it in both eyes, but prednisone helped immediately. Both of eyes were affected but my right eye was protruded 2mm further than my left eye. I quickly learned how to squint for photos so that they matched up, but in my everyday life, it was pretty noticeable.

I was diagnosed by a neuro-ophthalmologist the minute he walked into the exam room, but the definitive diagnosis came a day later via an orbital MRI with contrast. I have also had CT scans, some kind of picture taken of the space behind my eyes (I forgot what this was called), and with antibody testing. At first, two different ophthalmologists told me I had allergies, infections, or just plain old headaches.

Please continue to press specialists about this issue. The sooner you can get a correct diagnosis, the sooner you can begin treatment.

Thanks to Bobbi and gatorgirly for your responses. I continue to be amazed at how varied TED symptoms are person-to-person. I had proptosis years ago when first diagnosed with Graves', but the methimazole took care of that so I no longer had “the look”….But the pressure, it's really effecting how I blink and how I move my right eye around.

I can relate to gatorgirly when you talk about squinting to match up your eyes. Although you can no longer “see” the proptosis to look at me, the pressure is so strong that I feel like I have to squint to match my eyes up so they “feel” even to me. I know that sounds strange, believe me, it's even harder to explain to a doctor. Ugh.

Thanks for sharing your experiences and words of encouragement.

To the naked eye one of my eyes protrudes more than the other and have experienced more of a “pressure” feeling along with the protrusion issue. I've had both eyes affected at the same time, but more often it is one or the other rather than both.
I've simply been taking an Adult low dose aspirin daily and the intense pressure feeling has gone away, plus the difference in appearance has lessened. I've been taking the aspirin daily for a little over two months now.
I discovered the aspirin suggestion via “Googling” out of desperation for a “non surgical” solution for a pattern/stained glass issue I was having with my eyes. It not only solved that problem, but helped with the pressure issue, too. Prior to this, I was using warm compresses several times a day for the pressure and had begun wearing an eye patch at night to sleep.
This suggestion came from the WebMD website, even though when I was entering the problem of “stained glass pattern vision” directly in the WebMD site there was nothing that came up directly. I started entering “stained glass, patterned vision”, etc. via “Google” and was sent back to a WebMD link.
I have not discussed this with any medical doctors. I have an extremely high deductible on my health insurance and the area in which I live has no one specializing in Graves Disease or the eye issues associated with it. I do suggest that you discuss this idea with your own Doctor.
I take Synthroid daily and had the Radioactive Iodine treatment several years ago to destroy my Thyroid gland.

Thanks for your response. I've discussed with with my regular doctor, my endocrinologist, my optometrist, my opthamologist, etc. etc. Problem is nobody can say for sure what is causing the pressure. Original CT & MRIs from 2009 didn't show anything abnormal with orbits. My opthamolgist is just now noticing a difference between the two eyes but it has been several years. It has been a long, slow process and it is only getting worse and the pressure has never gone away. Weird.